WASHINGTON — U.S. Rep. Jaime Herrera Beutler is a half-hour late for her meeting with a news photographer. She strides into her cramped lobby in the Longworth House Office Building, clad in leopard heels and cradling her year-old daughter, Abigail. Her husband, Daniel Beutler, follows, slinging a diaper bag.
The photographer, however, will have to wait still a bit longer.
The family ducks into Herrera Beutler’s private office, so she can adjust the baby’s flower hair band and get her shutter-ready.
“I have to tell you, she does not smile,” Herrera Beutler warns as the photographer finally moves in for a shot.
Such are the prosaic fussings of a first-time mother — except Abigail is no ordinary child.
One day last month, the Beutlers had just come off the House floor, where Speaker John Boehner introduced Abigail as a medical miracle and hailed her doctor, who was seated in the visitors’ gallery. Delivered three months prematurely in July 2013, Abigail is believed to be the longest-surviving child to have been born without either of her kidneys.
Her condition, and the accompanying severe lack of amniotic fluid while in the womb, is nearly always fatal; most infants are stillborn or live mere hours. The little girl now receives home dialysis, and she is scheduled to undergo a kidney transplant soon.
Abigail’s odds-defying survival — and the controversial intervention that made it possible — vaulted Herrera Beutler into international headlines and may yet alter treatment protocols for others with the condition called Potter syndrome.
It forced Herrera Beutler to grapple with a medical crisis while juggling her job, including during a six-month stretch when she was all but absent from the Capitol. And it spurred her to help introduce legislation to aid families in similar situations.
The second-term Republican from Camas revealed during her second trimester that her fetus had Potter syndrome, or congenital lack of one or both kidneys. Typically, the lungs in such babies develop abnormally, leaving them unable to breathe on their own.
Two doctors told the couple the condition was untreatable, Herrera Beutler said at the time, adding, “We are praying for a miracle.”
Shortly after the couple went public with Abigail’s diagnosis, they learned of a possible treatment. A father from the Washington, D.C., area had a child who had a different condition also characterized by lack of amniotic fluid. The child had received saline injections to the amniotic sac, which provided cushioning needed for organs to grow in utero.
That quickly led the Beutlers to Dr. Jessica Bienstock at Johns Hopkins Medicine in Baltimore. Bienstock took an ultrasound of the fetus, then 23 weeks old, and saw no trace of amniotic fluid. The fetus also had no kidneys and no visible stomach or bladder.
Bienstock agreed to try injecting saline into the amniotic cavity with a needle. But she made clear it wasn’t accepted therapy for Potter syndrome.
“She did it for diagnostic purposes, not for treatment,” Herrera Beutler, 35, said during a joint interview with her husband recently. “We were the ones that were trying to convince the doctors” it could work.
The initial injection produced visible changes within days. An ultrasound detected a stomach and fetal breathing. Abigail’s skull no longer appeared narrow and elongated. She also had turned from breech to a normal, head down, birth position.
Herrera Beutler received four more weekly saline infusions. But she twice went into premature labor. The second time, she was transferred to Legacy Emanuel Medical Center in Portland, and Abigail was born early the following morning. She weighed 2 pounds, 12 ounces and was not quite 29 weeks’ gestation. The infant was otherwise in good health, but needed to start dialysis immediately. Johns Hopkins referred the family to Seattle Children’s and to Lucile Packard Children’s Hospital Stanford, two of the few medical centers capable of dialyzing infants so premature.
The Beutlers called both hospitals. Stanford called back first. Abigail was flown to Palo Alto, Calif., that evening.
She stayed at Lucile Packard for the first five months of her life and received daily peritoneal dialysis.
By then, Abigail had become a medical sensation by surviving beyond her infancy. National media called, among them People magazine, Savannah Guthrie of the “Today” show and George Stephanopoulos of ABC News.
Three weeks after her discharge, Abigail was hospitalized for 10 more weeks at Seattle Children’s after her dialysis catheter became obstructed. In all, she has been hospitalized more than half of her young life.
Despite all that, Abigail’s parents say she’s largely healthy. Abigail’s wide-set blue eyes peer out intently from above cherubic cheeks. She nibbles on her father’s tie and kicks with her legs on her mother’s lap. A feeding tube in one nostril to compensate for lack of appetite is the only obvious giveaway of her medical marvel.
Now 13 months old, Abigail has not started crawling, at an age when many of her peers are walking. Her father thinks Abigail’s muscle development has been delayed by her extensive hospitalization. She undergoes daily overnight dialysis at home.
Through the family’s ordeal, Herrera Beutler said, she and her husband were fueled by determination that Abigail “is going to bury us. We are not going to bury her.”
After Abigail’s birth, Daniel Beutler, who is interested in environmental law, suspended his studies at George Washington University Law School in Washington, D.C. He stayed in Camas near family to take care of his daughter full time.
Herrera Beutler seldom left her daughter’s hospital bedside. She skipped 140 consecutive House votes between July and September 2013. During the final three months that year, she missed 93 percent of the floor votes.
Amy Pennington, Herrera Beutler’s press secretary, said her boss remained engaged with her official duties during that time, including returning to Washington for critical votes and directing her staff on constituent services.
Since resuming her full duties, Herrera Beutler co-sponsored a bipartisan bill that would allow children on the federal Medicaid program who have complex medical conditions to seek specialty care outside their coverage areas. The legislation would create a voluntary network of hospitals to coordinate care, something difficult to do now because most state-run Medicaid plans are not accepted in other states.
‘A willingness barrier’
Herrera Beutler says she sees no contradiction between benefiting from her congressional health plan and her opposition to the Affordable Care Act, which has extended coverage to millions of uninsured Americans. She said the issue with Abigail was finding a doctor willing to take a chance on an untested procedure.
“Obamacare doesn’t have anything to do with this,” she said. “It wasn’t an insurance barrier. It was a willingness barrier.”
Herrera Beutler declined to discuss the costs of Abigail’s care in detail, but said “we are grateful we’re able to pay our bills.” She is among the least-wealthy members of Congress, with checking accounts and other financial holdings in 2013 worth between $15,000 and $50,000.
Herrera Beutler hopes her family’s journey to seek a novel intervention will spur other parents to press for potentially helpful care even if physicians are reluctant.
Abigail’s progress so far led Bienstock, her doctor, to argue it may be time to reconsider how to treat fetuses with Potter syndrome.
In the August 2014 issue of the medical journal Obstetrics & Gynecology, Bienstock and three co-authors acknowledged that Abigail and her mother endured “painful, psychologically traumatic and costly” invasive procedures. Nonetheless, they say the outcome could justify including serial amnioinfusion “as one option in the continuum of choices” offered to patients.
The same issue of the journal, however, carries an editorial rebuttal from two physicians from the University of Texas Health Science Center in Houston and Brown University.
The doctors contend there is no solid evidence that such infusions prevent malformation of lungs that are so lethal for Potter babies. They also caution that the procedures could hasten preterm births. What’s more, surviving babies may not live long or suffer long-term renal disease.
The authors criticize media references to Abigail as a “miracle baby,” which they blame for prompting a patient who had an abortion with a fetus with Potter syndrome to later wonder why her doctor hadn’t offered the same treatment.
“It is quite a leap to suggest that this intervention should be considered as an option for patients” based on a single case report, they wrote.
As for Abigail, the next big milestone is a kidney transplant. Her father has been screened as a suitable donor. She will undergo the surgery as soon as her body is big enough to fit the fist-sized organ, perhaps as early as December or January.